MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/13/2016 - 8:44pm
Replies by: clwcmwmlw

I'm waiting for my appointment but in the meantime I was hoping someone might have an opinion about the mole on my back. 

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_Paul_'s picture
Replies 1
Last reply 2/13/2016 - 10:51pm
Replies by: jennunicorn

After reading the links that were recently posted in the forum about the University of Chicago finding about gut bacteria in mice I started taking a probiotic that explicitly contains Bifidobacterium (this was the strain identified by the researchers that had such a profound impact on the metastatic mice).

According to the article (http://news.uchicago.edu/article/2015/11/06/gut-bacteria-can-dramatically-amplify-cancer-immunotherapy) "The combination of oral doses of the bacteria and injections with anti-PD-L1 antibody nearly abolished tumor outgrowth".

I have yet to ask my oncologist about this, whether its ok to take the probiotic, and there has not been a study yet on the effect on humans, but it just seems like such a potentially huge win for something so innocuous.

Have any of you sounded out your oncologists about taking the stuff?

- Paul

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_Paul_'s picture
Replies 2
Last reply 2/13/2016 - 10:26pm
Replies by: Mat, AshleyS

After two failed attempts I was finally able to complete a PET (ipi made me a type 1 diabetic and it’s hard to meet the SCCA's PET requirement of glucose < 150 with no meds or insulin the day of).

I am not due to meet with my excellent oncologist, Dr. John Thompson, until Wednesday. But I emailed him yesterday if he would share the radiology report with me in advance (he knows me well enough that I won't freak out) which he did. So when I got the results in an email at work, I took a deep breath, read it, and was pleasantly surprised by what appears to be good news.

In the "Impression" section at the end it states "No PET evidence to suggest macroscopic metastatic melanoma". Even though the PET/CT did image a bunch of nodules that were previously identified as "highly concerning" for MM, this time none of them demonstrated abnormal FDG uptake.

I am no doctor, but I wonder if this result, coupled with the fact that I have no known cutaneous (or sub-q) tumors, might actually mean I am NED? Or would I have to have all the non-FDG nodules disappear to qualify for that elusive outcome?

I guess its obvious by the fact that I posted this that I am eager to hear what he has to say, and I know I should just wait, but you guys are such a source of excellent information. Even though I have only met a couple of you, you all feel like my peeps!

- Paul

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SteveDB's picture
Replies 3
Last reply 2/13/2016 - 8:54pm
Replies by: DZnDef, _Paul_, Anonymous

Hi all.

It's been a while since I've dropped in, to say hi, share what's going on, etc....

I'm now 12 years NED.

As some of you old-timers from 17 years ago may remember, I'm stage 4, metastatic/MM.

My last surgery-- of 6, 5 with tumor-- was on 2/10/04. I was told at the time to seek chemo, and did so, with no response except to "do the basics", meaning interferon, or IL2. I was also told that I could simply take my chances, and come back-- WHEN it returned.

Being on the last  of my college classes, studying physics (more to keep me going, and prevent me from giving up), I decided to take my chances.

I'd already done a 4 year trial with the NNMC, on GMCSF, now known as Luekine, from www.Berlex.com. I'd "exceeded their expectations. and beyond the length of time anyone had been on the drug, and no one knew the long-term effects of the drug."

In 2001, I was dumped, and told-- best of luck to you. I had 4 more surgeries after that, and by 2004, I began thinking-- I'm really going to die. Even though no one had ever said dying was to be expected.

Well..... I'm still alive. I'm learning to live again, instead of being afraid of dying. There is Hope beyond cancer. There is Hope beyond MM. I've talked with a lot of people about my cancer, and some are afraid of the idea of miracle, in spite of the fact that all my doctors, nurses, PA's, etc.... keep saying that's exactly what I am, and what my survival is.

I won't tell you to not follow your doctor's instructions--- unless they want you to do "whole-brain radiation in propholaxis" (WBRP)-- because I followed them all to the T. Except for the WBRP. I did all the blood work ups, I did all the radiation diagnostics-- I even began to wonder if I was getting Leukemia, or Lymphoma (L & L) because I'd had well over 50 whole torso CT scans, 13+ whole body PET scans, etc....

I did the blood tests, and nada. I'm clean on the L & L.

So..... hang in there. As long as I live, I'll be back to update annually, and answer whatever questions I can. I am however 12 years out from this, and am now down to only seeing my Oncologist once every 5 years, even though I still see my normal doctor twice a year.

Live well.

One heartbeat at a time.

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Lauren_231's picture
Replies 2
Last reply 2/13/2016 - 3:50pm
Replies by: JuTMSY4, Jubes

Hi Everyone!

I'm hoping someone out there may be able to help... My dad has stage IV ocular melanoma and had his first infusion of Pembro on Wednesday. Thursday resulted in an overnight visit at the hospital due to bad chest pain. He didn't have any indications of a heart attack so who knows maybe this was a side effect?

Today's struggle has been a very "acidic" feeling stomach in his words. Eating is always a big challenge for him but he's managed to get down an ensure and eggs. Any suggestions from those that have faced similar challenges? We've been trying some over the counter meds and not much seems to be helping.

 

 

Thank you!

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Hi, everyone. I was diagnosed with melanoma on the bottom of my big toe on January 26, 2016 and I am grateful to find this forum. The doctor who did my original biopsy did not extend beyond the peripheral and deep tissue edges. The Legion was transected and its base could not be fully evaluated by the pathologist. The biopsy contained a flat piece of skin 0.6 by 0.5 by 0.1 centimeters with an off Center light tan lesion measuring 0.5 by 0.4 centimeters. Due to loss of elastic tension and tissue shrinkage the clinical sizes might be larger as reported by the pathologist. I'm assuming the shrinkage was due to how the dermatologist proceeded to take a biopsy. He used a knife to cut into the bottom of my toe but as I "commented" on the extreme pain and the bleeding he grabbed a gauze and apologized saying he "would have used novacane if he intended to go that deep". Everything seemed to be wrong from the beginning. He did not use anything to clean my toe before he cut it, once he realized he went deep without cleaning or numbing it and I got concerned with the pain and excessive bleeding,
he put the specimen down on the table, on the paper I was sitting on, and grabbed gauze to take care of the bleeding and cover me with iodine before picking up the specimen from the paper covering my table, and taking it by tweezers across the hall to be put into a container, I assume. I'm wondering now if anyone has had the surgery to remove the melanoma from the bottom of their toe so that I can learn what I might be expecting in the future. I know when my surgeon at Dana-Farber will cut this out for full biopsy it will be much wider and deeper than before. My biggest concern is with losing my large toe, as I've seen some people have, given the dimensions of the skin biopsy needs to be larger than the spot. For the first 10 days since my diagnosis my life went from quite normal to much confusion and worry, as I have read here with other people too. Once I got into Dana Farber in Boston I am feeling more positive and having told me 32 year old daughter, my only child, that hurdle is over. Like me she took it pretty well at first and is now experiencing the anger, worry, solitude of emotions that would be expected from an only child with no father. Since there is so little tissue on the bottom of my big toe I know that much of my toe bottom will probably be removed. The doctor said I'm looking at one surgery to do the biopsy correctly and another to follow up with the next step and then have a plastic surgeon join in. Has anyone had the surgery done on the bottom of their large toe?

Sue1962

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Replies by: Mat, Jubes, Scooby123

No one prepares you for the exhaustion of month to month anticipation, visits, results.  I am the patients wife, so this is my perspective and I imagine how amplified everything is for the loved one with melanoma. I sometimes think that if I chronicle here, it helps........keeps track of dates and resulte as days blend into days.

Findings:

Right mid lobe nodule has continued to respond to BRAF combo - now only 3x4 mm from June 2.1 cm - yay! 

Small sub centimeter lymphadenopathy in the axilary region remains the same since June, still showing uptake but stable.  Significant precarinal lymph node measuring 1.9x1 cm has not decreased and the level of fdg uptake has not increased.  Still stable.

NEW - nodular changes at the left lung base measuring 0.8x1.0 cm, limited fdg uptake but will need to be watched closely on next CT for changes.

So roller coaster continues, hopes up, hopes dimmed, and a new lung node to be potentially brought into the mix.

So, if anyone has any thoughts - share. I feel like the stories I hear with some are so intense, that our "stable" is something we should cling too, not complain about...............

Thanks, Rita

Rita

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keepthefaith11's picture
Replies 9
Last reply 2/13/2016 - 8:40pm

My father started Yervoy today. Nice to get the ball rolling. When speaking to his onc last week she said radiation was in the treatment plan and I mentioned reading about doing immunotheraphy and radiation simultaneously. At the appt. this week she agreed that would be a good way to proceed. They are currently working on the mapping for radiation and as soon as that is done radiation will start. Does anyone have experience with combining the two treatments? Seems there are some good studies saying this could be a benefit.

My father is stage 3C with extracapsular extention in 2 nodes, and micromets in 2.

Thanks!

Annie

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Hello!

First time posting here but I have been reading while we waited on our daughter's biopsy results.  I was wondering if someone could help me understand them?

The diagnosis is atypical mole but the description has me wondering if there was some question about it?  I don't know what spitzoid features and architectural disorder means; Googling for more info just leaves me confused.

It started out as a tiny, tiny freckle and over the course of about six months, grew larger and changed shape and color.  We live in Houston and because of her age and the need to remove it under general anesthesia, we opted to have it done at MD Anderson.  I would like to feel confident in their assessment - and I mostly do - but also am looking for feedback from those who are more familiar with these words than I am.  It reads:

 

 

 

DIAGNOSIS

(A) LEFT GLUTEAL FOLD, SKIN PUNCH:
Melanocytic nevus, compound type with spitzoid features and architectural disorder, present at a peripheral tissue edge. Clinical-pathologic correlation is necessary to determine if this is part of a larger pigmented lesion.
Multiple step sections were examined.

This case was studied and discussed at the dermatopathology faculty conference.

CAP PROTOCOL ON PATHOLOGY MATERIAL REVIEWED IN THIS ACCESSION

N/A

GROSS DESCRIPTION

(A) GLUTEAL FOLD NEVUS - A tan-white punch of skin measuring (0.4 x 0.4 cm, excised to a depth of 0.3 cm). On the surface of the skin, there is a (0.3 x 0.1 cm) dark-brown possible pigmented lesion. The deep and peripheral aspects of the specimen are bisected. The cut surface is tan-pink and rubbery. Entirely submitted in cassettes A1 and A2.

BIOMARKER TESTING

N/A

CLINICAL HISTORY

Atypical nevus. 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/12/2016 - 10:04am
Replies by: jpg

High-Dose Interferon No Benefit in Melanoma With Single Positive SLN - See more at: 

http://www.cancernetwork.com/melanoma/high-dose-interferon-no-benefit-me...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 0

Found this book helpful and it has Dr. Flaherty and Dr. Wolchok as writers too.  The emotional support part is good too.  http://melanomainternational.org/web-resources/the-melanoma-book

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cece's picture
Replies 4
Last reply 2/11/2016 - 4:30pm
Replies by: cece, Janner, slatman

Hello,

I was diagnosed last year with stage 1B (0.8mm, no ulcertaion, mitotic >1). The dermatologist I was seeing at the time told me it was nothing, despite my long, long history of atypical moles and having voiced my concerns to him about it being darker than other moles and scabby. I went back because it was still on my mind and sure enough, it was melanoma. Always be your own advocate!  Anyway, about ten years ago, I had two pinkish moles removed that turned out to be spitz tumors, both on my legs. They had been there as long as I could remember. There's not a lot out there on spitz tumors, other than that back in the day doctors called them "juvenile melanomas." Has anyone heard of a connection between spitz tumors and the chance of developing melanomas at other sites on the body? Also, does anyone have experience with the genetic testing to see if you have a gene that indicates you (and your children) are more likely to develop melanoma? Does insurance usually cover this test? I hear a lot in the new about the breast cancer and ovarian cance gene test, but not so much about the melanoma one.

Thanks!

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/12/2016 - 10:50pm
Replies by: Anonymous, Scottw, JuTMSY4

My wife is currently Stage IV and has recently completed her fourth round of the combo. At her recent CT scan, about 15 weeks into treatment, she had mixed results; some spots stable in lungs and liver, but several new spots have appeared in the skin. From discussing with our doctors, most response is occurring within the initial 12 weeks or so. I was wondering if anyone here on this combo has 1. had an experience where it took longer for the treatment to have an effect and 2. experienced new spots appearing before the drugs began to work? We are investigating other treatment options and trying to determine how long to continue with the combo before trying something else.

Appreciate any insight you can share on your experience being on the combo.

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Angsta39's picture
Replies 2
Last reply 2/10/2016 - 6:36pm
Replies by: Angsta39, jamieth29

Went to see derm in December and pointed out two red bumps that had come up quite suddenly a few days before my appointment close to my original site. Derm did a biopsy and it was melanoma. Since then, I have see oncologist and melanoma surgeon and they have numbered and taken photos of the new bumps. When I saw them on 1/26/16, I had 12, and when I counted them two days ago, there are 32. I am sceduled to start T-VEC injections for each lesion at the end of this month. I was wondering if anyone else has had this done and what kind of side effects I may be in for, like can you drive yourself home after the injections, etc.

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jennunicorn's picture
Replies 8
Last reply 2/11/2016 - 7:54pm

Had my 3rd infusion on January 25th. I continue to have very little side effects, yay! I know I am not out of the woods yet, but I am so glad that this is going a lot smoother than it could go. I continue to have fatigue, very manageable. I got a cold last week, so I am dealing with this annoying cough that is getting a little better every day, but still very annoying. The eczema flare ups on my hands has even gotten better. After the first infusion almost every morning I had to use my steroid cream to calm my hands down. Now, it is barely there. There was one morning last week that I had some diarrhea and worried that I was going to have to deal with that side effect. But, it only happened twice that morning and went back to normal, so must have been something I ate. I do hate that if something like that happens, I instantly worry that it's a side effect. 

I hope everyone else on ipi is doing well too and have manageable side effects.

Infusion 4 is next week, the 18th. Thankfully these weeks have been going by very quickly and I am looking forward to getting back to work full time and going on with my life, not worrying about my next infusion or whether what I am experiencing is a side effect that needs medical attention. 

Wishing everyone out there the best in their journey. 

-Jenn

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